Jpouch - leakage at night only

Posted by janspons @janspons, Mar 1 7:56pm

I have had a jpouch since 1996, basically in remission since. I have had a couple hiccups - bartholyn cyst, recto-vaginal fistula but no hospitalizations since the surgery. For the past 15 months I have had fecal incontinance, but ONLY while I am sleeping. I have 97% control while awake during the day. I cannot figure out why this is happening only at night. My meds have not changed, though maybe they need to. I was prescribed suppositories but they really didn't do anything. I am wondering if I need to try some newer meds. I have been on the same ones for about 10 years or so - azathioprine, cipro/flagyl rotation every 2 weeks, OTC loperamide, metamucil powder & gummies. I am at a loss. I know some have things way worse than I do, but this has thrown me for a loop, and I can't seem to control it. Thanks in advance for any input.

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Lisa Lucier, Moderator | @lisalucier | 4 days ago

So sorry to hear about the fecal incontinence, @janspons. I had a medication do that to me, also at night, and it was miserable.

Tagging a few members who are familiar with J-pouches and/or may have input on controlling the fecal incontinence at night @davem @lisag03 @busyyaya. I'd also like you to meet @tbrksweetyahoocom @mjohnson37 @marie2000 @jackiem95 @dnikulas @hopeful33250 who may have some thoughts for you.

How are you doing this week, janspons?

Teresa, Volunteer Mentor | @hopeful33250 | 3 days ago

Hello @janspons,

I'm joining @lisalucier in welcoming you to Connect. I am sorry to hear of your problem with nighttime fecal incontinence. While I've never had Jpouch, I have had several surgeries of the upper digestive tract which has resulted in digestive tract problems. I also have diverticulitis and I'm familiar with one of the medications you listed, Flagyl. It sounds as if you have been taking this for a while. Is that correct? Do you notice the nighttime incontinence occurring during the 2-week period when you take the Flagyl?

Flagyl has always been a problem for me and has resulted in chronic diarrhea and loose stools. One time when I was in the doctor's office for diverticulitis, the doctor wanted to prescribe Flagyl. I told him about the problem I had with it and he listed Flagyl as medication allergy. Therefore, I don't use it anymore.

You might check with your doctor to see what else you could try besides the Flagyl just to see if that med might be the culprit. Sometimes we need to be our own advocate (and detective) to find an answer to our problems.

I look forward to hearing from you again as you deal with this problem. Will you continue to post about your progress in dealing with this?

aileenredding | @aileenredding | 3 days ago

I have a pouch after the removal of my congenitally malrotated colon. I don't know what kind. I have fecal incontinence. I can have it at any time. I also have had incomplete bowel movements. I have had them for years so I don't think it is connected to my pouch for me. I sort of think these 2 conditions might be related for me. When I have fecal incontinence it is hard to control. I am so grateful there is a place for me to talk about these things.

janspons | @janspons | 2 days ago

In reply to @hopeful33250 "Hello @janspons, I'm joining @lisalucier in welcoming you to Connect. I am sorry to hear of..." + (show)

Thank you for your reply. I haven’t noticed much difference between the two. I was also prescribed a 2 week supply of suppositories, which I didn’t notice much change either. I am due to have a pouchoscopy this summer/fall. What my problem with this is my current insurance has a high deductible & not sure that Mayo is in my network. I am going on Medicare in July with a supplement that does include Mayo in network, so I am trying to hold out until then. I know people deal with this constantly, but I am still stumped why it started so randomly, and seems to only be an issue while asleep. I am continuing on my same regimen as of now & just continue to wear some type of incontinence pad/underwear at night.